Posted in #teamhadley, Beating Hemiplegic Migraine, best friends, Chronic Migraine, Daily Migraine, Dystonia, family, Health Blog, Hemiplegic Migraine, HM, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized

A Small Thank You

To my sweet friends,

Thank you for never leaving my side. Thank you for being the two that will never let me break. You’ve been there to catch me when I fall (literally 😉 ) and always celebrating the smallest of wins with me. Ashley, you’ve been right next to me since the very beginning. That’s actually quite literal as I was sitting next to you the first time I passed out. You spent so much time sophomore year dropping everything to help. The first time I was ever hospitalized you were sure to bring me anything I needed, including your company. Kelsey, you came to sit with me every night that trip for hours. Neither of those things have changed. I quickly learned how deeply everything was hurting both of you. Through the seizures, unknown and loss of “old Hadley” I could see the same pain in your eyes that mine reflected. Just as quickly I learned never to take either one of you for granted.

There have been so many canceled plans and important things to you I should’ve been at but couldn’t make it, not a single time have you ever gotten upset or made me feel any more guilty. Instead, you’ve learned the details of Hemiplegic Migraine and can recognize when I’ve reached my limit, often having to snap me out of being so stubborn. Without complaint you’ve had so many lunch dates or hours of waiting in the hospital with me. I can’t tell you how much I hate feeling like our friendship is often one sided as I haven’t been there for you way too many times.IMG_4506

Kels, you took time out of your always hectic schedule just to fly with me to Minnesota for my Mayo Clinic visit, in the middle of January. You ate Dairy Queen for dinner with me after a rough first day, because obviously ice cream is the best medicine. One of the only things I can remember when I was in ICU this spring, was waking up to see you there holding my hand. Even though I knew you were in the middle of finals week and couldn’t stay in town for much longer than 12 hours. But you were right there. How many people get that much support from one person? It cannot be many. After moving back home for the summer you spent the next 22 days in the hospital with me. You never missed a single day. I would sleep for hours and you’d still be there when I woke up. I’m not sure what we spent more hours doing, playing Uno or trying to untangle wires and stop beeping? You stayed up with everything each doctor said, being my voice when I couldn’t be my own. If our roles are ever flipped, know that I’ll sit in your hospital bed letting you actually cry on my shoulder, and I’ll be right there to hold your hand before or after any procedure. You will always be the Christina to my Meridith.

Ash, you may not have gotten to travel with me, but I know you’ve been willing and wanting to every time. The countless hours we’ve spent FaceTiming mean just as much. You make sure to always keep me laughing, which is an equally important medicine as ice cream. 🙂 This is why our ice cream dates are always necessary and successful. I’m so so glad you’ll talk to people like Bonnie for me and play along when saying “yes, I was in an accident”, is just much easier to explain.Thank you for not just the hours spent in the regular hospital, including coming late when you get off work, but also for the long nights we’ve gotten stuck in the ER. I’m pretty sure you know just as much about HM as I do, making me confident you would make sure I was correctly taken care of in any circumstance. You have the biggest heart and are constantly giving to me in any way I ever need. There is never a dull moment, no matter how awful I feel I end up laughing so hard every time. I absolutely love you and can only imagine the things we’ll continue to get ourselves into forever.

To the both of you, I wish thank you held so much more significance than it does. Thank you for never leaving me lonely or broken down. Most of all, thank you for always being able to hold onto apart of, again, my “old” self after I lost that. I pray that everyone have at least one friend as great as you. I think that’s important. Though I don’t want either of you sick or down, I do hope that someday I can repay you and be just as good of a friend back. I love you both so so much!

~Had

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Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, family, Health Blog, Hemiplegic Migraine, HM, Just Keep Keepin On, MU Health Care, PCU, PICC line, port, port surgery, portacath, Seizures, SHM, Sporadic Hemiplegic Migraine, support, Today I Win, Uncategorized, University ER, University of Missouri Health Care

Winning.

One year ago today I published a blog titled, “Today, I Win”. Never would I have remembered this date, but Timehop gently reminded me today. I captioned my shared post with one simple sentence, “This is a special one”. Little did I know at the time just how special this post would end up being

As I clicked the post to reread my thoughts I got slight butterflies. Sure, I remember the day, I can tell the story, but I didn’t expect for each word to impact me so deeply. Reading about driving for the first time in years, I could taste the exact newfound independence from that day before I finished my description of it. That feeling has yet to be duplicated since that day, and never again will I feel that exact thing. It’s the day I chose I was going to win. 

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Never in a million years would I have been able to guess just how empowering this statement has become. It’s hard to fathom how much power can be held within three little words. No matter the battle you may be fighting, you’ll need bravery, strength, drive, family and so much more. You won’t make it through any battle without being humble or proud of yourself. Life requires you to have confidence in yourself, but you’ll learn how important a good cry can be. This saying, “Today, I Win”, encompasses each of those traits, but the list doesn’t stop there.

I won’t sit here and say that those are the first and last words I say to myself every day. However, every day I remind myself of it at least once because when times are tough, they are very tough. It’s on those bad days I have to remember how good it feels to always win. When I spent nine months having to drag myself, and family, into the emergency room every week I questioned how I was winning. If I wasn’t living, if I was barely scraping by, could that really be counted as “winning? It didn’t feel like it. But I was. In my hours spent sitting in that waiting room I watched hearts break, emergency helicopters land, and people leaving empty. Even though I was there every week, I also left every week. And I left feeling better than when I came in, which is more than some others can say.

The beginning of this past April, my mom and I found our way to yet another new neurologist. We had been waiting for this date, this appointment and this doctor for close to fourteen months. None of those three things were anything new to us, nor was the anxious knot in our stomach and prayer for help. As he walked through the door we knew Dr. Cheesy was quirky and unique. Some of his very first words were this; “I’ve learned you can’t just look at one thing. That doesn’t work. Specialists will bounce people around and then they’ll end up with me. I’m usually the last in line, so I can’t just pass you on to anyone else.” As The Cheese spent the next hour asking questions, examining and thinking, my mom and I both knew we had just won a big one.

In April and May, just a few months ago, the Today, I Win mindset wasn’t any easy one for any of my family or friends to keep. As I was hooked up in ICU getting a feeding tube, there didn’t seem to be any spot worse. As I laid mostly unconscious for days upon days, the amount of fight, bravery or resources didn’t seem to matter. Through the many tears cried and the confidence in my doctors, there still didn’t seem to be a light at the end of the tunnel. To my family and loved ones it didn’t feel like Hadley was in there. I couldn’t remember my birthday or walk without help. There were some very scary days. After 22 days, I walked out of that hospital with more answers and plans in place. Yet again, I had won. We had won.

Today, I Win has turned into something much greater than myself. It has turned into a mindset and support from so many others. I hope others use this motto to help them through. That’s the beauty of this mindset, it can be made to fit all battles, because we all have them.

Now, today. Today I woke up. It hasn’t been a great day for me, I’ve been struggling, but we’re trying to be proactive in stopping what we know is coming. Today, I drove to the doctor. Today, I met with Dr. Cheesy just as I do every single Monday. We discussed my week, we discussed the current plan and anything else needing to be covered. Today, I had dinner with my family. Today, I am sitting down and posting my first real blog in 3 months. As I write this, I touch the charm on my neck that reads”TIW”, just as a reminder that I am lucky to have so many people fighting to win this with me.

Today, I Win.

Today, We Win.

 

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Today I Win, Uncategorized

October 9th. One Year.

One year ago today, October 9th I was diagnosed with Sporadic Hemiplegic Migraine(SHM). SHM is one of two types of a rare neurological disease, caused by a gene mutation. Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine affect only 3% of our population, world-wide. Sufferers of both SHM and FHM present with stroke-like symptoms, visual disturbances, memory loss and more. Severe attacks may leave people with prolonged hemiplegia and seizures, these are the attacks I suffer from most. 

Want to learn more? Check these out!👇🏼
https://rarediseases.info.nih.gov/gard/10768/hemiplegic-migraine/resources/1
http://ghr.nlm.nih.gov/condition/sporadic-hemiplegic-migraine

In the last year I have found peace with having fought two years for a diagnosis. I’ve been grateful to have found the HM community to lean on and learn from. We’ve found comfort in Hemiplegic Migraines, in the most odd and unfortunate way. We sure have learned a lot this year! 

This is a post I shared on my original blog, the one I kept a secret😉, the day I got to go home after those initial 15 days in the hospital.

After being poked and prodded, scanned, tested and asked uncomfortable questions, 8 rounds of blood tests, two IV, one IV infection, one IV knocked into a nerve, 11 shots in my butt and one everyday in my stomach, my first “surgical procedure” getting my PICC line, my second procedure getting my endoscopy, 3 ultrasounds, a couple of hours worth of scans, getting woken up 5 times a night orrrr not sleeping at all, getting infusions around the clock, having good days and bad, and staying in the hospital 14 nights…….I’m happy to say how worth it all of that was. As my “anniversary” rolls around again, soon, it’s nice to at least feel knowledgeable and not so shocked or in denial. It’s chronic, so it’s something I’m stuck with. In typical Hadley fashion, it’s amongst the most rare so it doesn’t come with a treatment locked and loaded. We’re happy to be doing what we can and letting my body breathe a little after so many heavy drugs is best for now.”

 
I’d say some things have changed in the last 365 days.
  1. Two IV’s is for wimps💁🏼
  2. Talking about getting shots in your butt doesn’t ever stop getting awkward. No matter how you put it. No matter how many times.                                                                                                                                                                                         🙋🏼My dad gives me shots in my butt.                                                                                                                                             🙈See. Still awkward.

3) PICC lines and edocscopys are hardly surgical procedures. 

4) I hope my writings I share aren’t so whiny!!

5)….I was serious about heavy drugs. I don’t remember writing this and couldn’t tell you these details otherwise. Seriously.😂

Willis Tower in Chicago!

 

Visiting “the bean”…what I wanted to see most but have no memory of. Lol

    

 Fun night in the city with my momma the night before 🙂

Hard Rock Cafe!!

  

 

On one last note, if you are interested in purchasing a shirt, all funds raised from this shirt will go directly to Hemiplegic Migraine research and trials to be done in the United States.

Includes 3 styles with a black, grey, or white option for each.
Includes 3 styles with a black, grey, or white option for each.

Order Here!

https://www.customink.com/g/hrr0-00aa-k9cq